Presuming Altruism

‘Who Owns My Body?’

A Conference on Property Rights in Human Bodies,

Tissue and Data, and on Organ Transplantation

6-7 April 2017, The University of Hong Kong

Presuming Altruism

Terry Kaan

Associate Professor in Law, Faculty of Law& Co-Director, The Centre for Medical Ethics & Law

A Joint Centre of the Faculty of Law & the Li Ka Shing Faculty of MedicineThe University of Hong Kong

[email protected] | http://www.cmel.hku.hk

Presuming Altruism:Perspectives from Singapore

® 1st kidney transplant operation – 8 July 1970® As with UK Human Tissue Act 1961, legislative response to

uncertainties of the Williams common law rule – the SingaporeMedical (Therapy, Education and Research) Act 1973[Reference 1] (“SG MTERA”) enacted

® Hong Kong Medical (Therapy, Education and Research)Ordinance 1968 [2], similar to old UK Human Tissue Act 1961

® But SG MTERA has added twists: incorporates some aspect ofrepealed UK Anatomy Act 1832 (unclaimed bodies) and aschedule of priority for family members who may object or giveconsent (s.2: spouse, child, parent siblings in that order)

® SG MTERA also allows (s.5) overriding of donation by family

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Presuming Altruism:Perspectives from Singapore® Did the SG MTERA work?® National Kidney Foundation (NKF): ’we sent donor cards and

explanatory brochures in English, Chinese and Tamil to everyhousehold in Singapore. … the results were shocking. Less than1,000 people responded. We require 800,000 organ donors tomeet Singapore’s needs’. (Parliamentary Select Committee [3])

® Minister of State for Health, 1986: ‘In 1985, 218 Singaporeansdied of kidney failure.’ ‘For the whole of 1985, only 1 cadaverickidney transplant’ despite that ‘every year more than 700people die as a result of accidents. Estimate is that 40-45 ofthese 700 would be suitable cadaveric donors [4]

® Thoughts turned to implementing presumed consent legislation

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Presuming Altruism:Perspectives from Singapore® NKF again: ‘majority of Singaporeans support organ donation.

A [newspaper] survey conducted in 1983 using a samplepopulation of 17,448 readers showed that 85% were in favour oforgan donation and 65% in favour of the opting out law’.Similar situation in developed countries where 70%-80% agreeto organ donation, but only 10%-20% actually sign one [5]

® Desperate situation: only 22 cadaveric kidneys transplantedbetween 1970-1978, and none between 1979-1981 (StraitsTimes 2 November 1981 [6])

® 27 October 1986: First Reading of the Human OrganTransplant Bill 1987

® Immediately controversial, referred to Select Committee whichinvited representations from the public

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® The proposed scheme: presumed consent for donation of’organ’ (originally only kidneys) for anyone between 21-60dying in a hospital, right of objection, non-objectors accordedpriority over objectors in allocation of organs

® Muslims as a class excluded, because the Majlis Ugama IslamSingapura (the Islamic Religious Council of Singapore) hadissued a ruling in 1973 that donation was ‘not permissible’ …‘based on the consideration that one does not own one’s body’and therefore the right to donate [7]

® But Bill provided that Muslims could nonetheless still execute agift under the SG MTERA – and thereby be admitted to thepriority class

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® Fierce objections from some – may be that source of muchcontroversy was the Bill’s definition of death in terms of braindeath (s.3):‘For the purposes of this Act, a person has died when there hasoccurred irreversible cessation of all functions of the brain…’

® Putting the cart before the horse, and object lesson for HK?® Muslims especially concerned that the definition of death

comply with their religious belief that heart and lung functionmust stop entirely at some point (hence apnoea test) [8]

® Eventually Government agreed for delayed implementation ofAct after publicity campaign with mailers to every household

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® The Singapore Human Organ Transplant Act is now 3 decadesold – has been amended many times

® Significant changes: inclusion of Muslims (following reversalof ruling by the Islamic Council), donor age limit of 60removed, organs now include kidneys, liver, heart and corneas

® Biggest gaps? Heart-lungs blocks, pediatric organs, deaths athome / outside hospitals, other organs – must be asked forunder SG MTERA

® Clinical picture not encouraging: crude incidence (CR) of end-stage renal disease (ERSD) / chronic kidney disease stage 5(CKD5) notified to the Singapore Renal Registry jumped from210.2 per million residents in 1999 to 431.7 pmp in 2014 (Table5.1.1.1, Singapore Renal Registry Annual Report 2015) [9]

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® But corrected for the age profile of the population, the agestandardized incidence rate (ASR) increased by only 43% from1999 to 2014 – implication is that ‘the increase in ERSD caseswas driven mainly by the effects of ageing’ [10]

® The ASR for the incidence of kidney transplantations inSingapore has actually declined from 20.4 pmp in 1999(reaching a peak of 27.0 pmp in 2006) to 15.4 pmr in 2014 [11]

® People do go abroad for transplants, but not as much ascommonly believed (around 20% of patients) – of moreconcern is the steep drop in cadaveric tranplants (65% in 1999,23% in 2014) – living donations has had to fill the gap (14.5%in 1999, 55% in 2014) [12]

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® Only a very small proportion (less than 3% in 2011) haveobjected and opted out – of these, no data as to whatproportion are Muslims [13]

® In general, picture has shifted from reliance on HOTApresumed consent cadaveric donations to living donations(kidney, liver)

® Complex reasons?® An ageing population, like Hong Kong, now among the top

life expectancies in the world (2015 Singapore M/F LE80.4/84.9; HK M/F LE 81.4/87.3)

® People living healthier® And more carefully, fewer motorbikes …

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® Complex reasons?® Better / more options for medical interventions® Universal availability of dialysis at hospitals and

neighbourhood centres unlike the grim choice of the past(machine dialysis overwhelming preferred over PD)

® Metabolic diseases and especially diabetes is a seriousproblem in Singapore (genetics, ageing population and goodfood): 12.8% of adults are diabetic, and only 1 in 3 areaware [14][15]

® ASR for diabetics requiring dialysis rose from 689.9 pmp in1999 to 895.8 pmp in 2010, making 59.9% of new ESRDpatients [16]

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Presuming Altruism:Perspectives from Singapore® Complex reasons?

® In simple terms, ‘2 in 3 new kidney failure cases were dueto diabetes’ (National Diseases Registry Office) [17]

® Availability of alternatives – transplant not without issues® High proportion of people wishing to die at home® Prevalence of chronic Hepatitis B infection® The rise of cancer as the leading cause of death (around

30%), with pneumonia second (19%) ahead of ischaemicheart diseases, cerebrovascular diseases, stroke (for acombined 23%) (Ministry of Health) [18]

® Transplants will not help:– either as donors or recipients

® Is Singapore a victim of its own success?

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Presuming Altruism:Other Issues® Unexpected Hiccups:

® Definition of death in terms only of whole brain deathwithout making it an universal one (e.g. for the criminallaw etc and not just for transplantation) probablysomething that could have been avoided

® Subsequently put right with an universal definition ofdeath in s.2A of the Singapore Interpretation Act in 1998which now provides for certification of death in thealternative (traditional cardiovascular death, or‘irreversible cessation of all functions of the brain of theperson’) – cf statutory clinical criteria for determining‘irreversible cessation of all functions of the brain’ in theInterpretation (Determination and Certification of Death)Regulations 1998 [19]

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Presuming Altruism:Other Issues® Trust:

® Hong Kong is still without a legislative definition of braindeath

® If presumed consent legislation, whether ‘soft’ (family mayoverride), or ‘hard’ (Singapore’s, may not override), best tosort out definition of brain death first

® Need to be clear about public accceptance of suchlegislation, taking into account cultural and religiousperspectives

® And clear about statistically likely returns for such sociallycontroversial programme - presumed consent may notresult in higher donation rate (Hong Kong LegislativeCouncil Secretariat 2016) [20]

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Presuming Altruism:Other Issues

® Trust:® Need to be clear-eyed too, about prospects for very ill

patients – likelihood of underlying condition againcompromising or destroying the donated organ?

® Ultimately, respect for donors and their families – wecan ask respectfully and with sensitivity. But we cannotinsist

® Old saw perhaps, but better (and persistent) educationthe key – especially with community and religiousinvolvement

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Declaration of InterestsThe speaker served from 1998 to 2014 as a member of theAdvisory Committee on Transplantation (originally theAdvisory Committee on Kidney Dialysis andTransplantation) constituted by the Singapore Ministry ofHealth.

Note on SourcesThe information given in this presentation are compiledentirely from that available to the public – see Referenceson the following page for the URL links available in mostcases.

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References:

1. The Singapore Medical (Therapy, Education and Research Act) Cap. 175(http://statutes.agc.gov.sg)

2. The Hong Kong Medical (Therapy, Education and Research) Ordinance 1968(Cap. 278) (https://www.elegislation.gov.hk)

3. Report of the Select Committee on the Human Organ Transplant Bill [Bill no26/86] presented to the Singapore Parliament on 22 April 1987, at A8(https://www.parliament.gov.sg/publications-select-committee-reports)

4. Singapore Hansard (Official Reports - Parliamentary Debates), for ParliamentNo 6, Session 2, Vol. 48, Sitting No. 9, 9 December 1986, at column 865 on theSecond Reading of the Human Organ Transplant Bill(https://www.parliament.gov.sg/publications-singapore-official-reports)

5. Report of the Select Committee, ibid. at A7-A86. ’Proposal to get more kidneys for transplant’, Straits Times, 3 November 1981,

page 1 (http://eresources.nlb.gov.sg/newspapers/)7. ‘Organ Transplantation in Islam’ [2007(?)], Majlis Ugama Islam Singapura (The

Islamic Religious Council of Singapore)(http://www.muis.gov.sg/officeofthemufti/documents/Muis%20kidney%20book%20ENG.pdf

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References:

8. Report of the Select Committee, ibid., Paper No. 5 at A5-6, and B1-3.9. ‘Singapore Renal Registry Annual Report 2015’ (“SRR Report 2015”), Health

Promotion Board, at Table 5.1.1.1(https://www.nrdo.gov.sg/publications/kidney-failure)

10. SRR Report 2015, ibid., 5.1.1 ‘CKD5 Incidence’ at pages 13-1411. SRR Report 2015, ibid., ‘5.6 ‘Incidence of Kidney Transplantation’, Table 5.6.112. SRR Report 2015, ibid., ‘5.6 ‘Incidence of Kidney Transplantation’, Table 5.6.413. Singapore Hansard, ibid., Parliament 11, Session 2, Vol. 87, Sitting no 18, 28

Feburary 2011, at column 282614. “Diabetes in Singapore – 2015’, International Diabetes Federation

(http://www.idf.org/membership/wp/singapore)15. ‘Better Health, Better Care, Better Lives: The War on Diabetes’, Ministry of

Health Singapore (2016)(https://www.moh.gov.sg/content/dam/moh_web/PressRoom/Highlights/2016/cos/factsheets/COS_Factsheet%20-%20Diabetes.pdf)

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References:

16. ‘Trends of End Stage Renal Disease in Singapore’, National Registry of DiseasesOffice, Singapore (2013) (Table 3)(https://www.nrdo.gov.sg/docs/librariesprovider3/Publications---Kidney-Failure/health_factsheet_esrd_2013feb.pdf?sfvrsn=0)

17. ‘Information Paper on Diabetes in Singapore’, National Registry Diseases Office,Singapore (November 2016)(https://www.nrdo.gov.sg/docs/librariesprovider3/default-document-library/diabetes-info-paper-v6.pdf?sfvrsn=0)

18. ‘Principal Causes of Death’, Ministry of Health, Singapore(https://www.moh.gov.sg/content/moh_web/home/statistics/Health_Facts_Singapore/Principal_Causes_of_Death.html)

19. The Interpretation (Determination and Certification of Death) Regulations 1998(go to http://statutes.agc.gov.sg/aol/home.w3p, click on ‘Interpretation Act’, andthen on ‘Subsidiary Legislation’)

20. ‘Research Brief: Organ Donation in Hong Kong’, Hong Kong Legislative CouncilSecretariat (July 2016) (http://www.legco.gov.hk/research-publications/english/1516rb05-organ-donation-in-hong-kong-20160714-e.pdf)

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‘Who Owns My Body?’

A Conference on Property Rights in Human Bodies,

Tissue and Data, and on Organ Transplantation

6-7 April 2017, The University of Hong Kong

Presuming Altruism

Terry Kaan

Associate Professor in Law, Faculty of Law& Co-Director, The Centre for Medical Ethics & Law

A Joint Centre of the Faculty of Law & the Li Ka Shing Faculty of MedicineThe University of Hong Kong

[email protected] | http://www.cmel.hku.hk

Presuming Altruism

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